Category: physical pain

ramblings 28

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, physical pain, psychache, writing

I’m hurting tonight. Left leg is swollen and hurts like a SOB. I hope I get some sleep tonight as I got to get up early tomorrow. I have an appointment with a group leader I hope to get into a group with. I don’t know if it will work out as the walk is a hike from the T station. I’m worried I might not make it. I’ll bring my cane tomorrow just in case my leg is in support. I know it is because it is snowing out.

Today was my niece’s birthday party. I made chicken wings for the party. They were gone by the end of it. Everyone loves my chicken wings.

I got a paper I need to revise for an upcoming blog post. I have had a chance to do it today and doesn’t look like I am going to do it tonight as I am pretty medicated, or will be. The pain started when I woke up this afternoon. My sister kept calling me like every friggen hour on making the wings so I didn’t get much sleep. I hope it doesn’t last long because it will drive me crazy and it doesn’t help me walking.

I hate waking up early for any reason but tomorrow I will make an exception and go to this appointment. I hope it is for the good because I really want something that gets me out of the house and maybe help my mood somewhat.

The Price of Walking

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, mood disorders, physical pain, suicide

Twelve years ago I lost motor function in my feet and legs. It was caused by a disc fragment that was pressing on my nerves. I had to have surgery to remove it. It was the size of an almond. The road to recovery was not an easy one. I had to relearn to walk again with a walker. It took a few months before I felt confident enough to walk with a cane. Took me several more months of walking with the cane before I grew dependent on it and decided to walk without it. My balance was still somewhat off but I was walking.

Today I am walking with a price. I never learned to walk properly and my left foot never regained full strength like my right. So instead of walking heel to toe, my left foot decides to do a swerve maneuver and cheat to get to where it needs to be going. I can’t watch my feet where they land but this is what my physical therapist sees when I get evaluated. Most of it has to do with fatigue. Once I get fatigued, the swerving starts and pulls at muscles and tendons that should not be involved in walking. That is where I am at today. I have pain in my leg and foot and ankle all because of this disc. But it’s a small price to pay. Least I was able to regain something of what I lost. But it cost me my job. I am unable to work because I cannot walk long distances without fatigue and pain. Even though I have done my job for years the wear was just too much. Even today if I walk too long or stand too long I pay the price of pain. I wear an AFO, least I am supposed to. I haven’t worn it in a few weeks because I don’t go out much anymore. I might go out 3 days a week if that. I go out to get my coffee and maybe write a little outside of the house, to break up the routine of nothingness. I was once an active guy. Now I have nothing to do for hours on end. I was once working two jobs. Now I have no job. My income consists of my SSD and long term disability I get from work. I don’t think I can go back to work at the job I was doing. It was too stressful and chaotic at times. Long hours on your feet walking around a huge lab. Just getting there I was hurting.
Now my doc wants me to go back to physical therapy. I have thought about it but I keep wondering if it will really help. I do the exercises, I stretch, but I see no benefit. All it does is cause more pain than what I was in. My neurologist wants me to start this new pain physical therapy program that is supposed to help those with injuries like mine. But I am too scared that I am not going to be able to afford it with the copays every other day or every week. I can barely keep up with my own psychotherapy copays. That what truly is stopping me. Just knowing I have to pay $15 per visit for something that might or might now work for me. I wish I could just join a gym and walk on a treadmill but those days are over. I can barely walk down a block or a few blocks without pain. I rather just take my pain meds and do as little as possible. Hence why I don’t leave the house as much anymore, even if it is for a cup of Starbucks coffee. It used to be the one joy in my life, now it’s nothing but a hassle. Another price I have to pay for learning to walk again.

Thing is even if I go to this special program, they aren’t going to see the pain that I am in right now. It’s almost one o’clock in the morning. That is when the pain really gets going. So how am I going to portray myself as having pain when before 9 pm I am not in pain and feeling ok? It sucks because I would love for them to see how swollen my foot gets at this time. How much my foot throbs in pain, how much the zaps make my foot jerk, or the vise like pain that has me crying out in agony every night. The pain gets so bad that all I can think about is death and suicide. That is the price I pay for learning to walk again. And the price is too high.

Because no matter how much I pay my copays, no matter how many visits I make to the physical therapists, they are not going to be with me as I am crying in agony wondering why I am living this life. So Monday I will call and make an appointment with this special physical therapy group and see what things they will show me that I already know in the twelve years of living with this bullshit. Because in all these years, I have yet to regain strength in my foot, despite all the exercises they have given me. I truly have lost the motors of my foot because I got hit with this a second time at another level that left me with foot drop again. I think that if I didn’t get this a second time I probably would have been ok and not be in the predicament I am in now.

memories of the past

by Midnight Demon, posted in cauda equina syndrome, CES, Chronic pain, depression, mood disorders, physical pain, writing

It’s the beginning of February. January is now a thing of the past. It was a tough month to get through. I still am hormonal and don’t like it one bit. I never cry unless there is a good reason but lately everything makes me weepy.

February is not a month I enjoy either. It is an anniversary month of my CES, Cauda Equina Syndrome. I got it 12 years ago when I was twenty-five and it has messed up my life since then. (for story see https://midnightdemon.com/2012/12/21/my-ces-story/) I have made progress with it. I can walk without assistance but I need an AFO (ankle foot orthotic) to do so or I pull my muscle in my leg, causing me pain. I can’t stand too long or walk long distances like I used to before CES. And it sucks because I love to walk. Now I’m lucky if I can walk around the corner to Walgreens without feeling fatigued and in pain. I wish I could say that the bowel and bladder aspect is great but they have gotten worse over the years instead of better. I no longer trust farts. I have had too many accidents thinking it was air when in reality it was shit. To many CESers, it’s called Sharts. My bladder leaks when full until it registers that I have to go. I guess me wearing feminine product at this time is a good thing. I don’t have to worry about leaking into my underwear as there is a pad there. I mostly have to worry more when I go out.
The pain of living with CES is horrendous. But since I have been back on my mood stabilizer, the zings, burning, and zaps have been to a minimum. Except my leg pain has been there with it’s own twinges and pain. This is the type of pain that drives me nuts and when it continues longer than twenty-four hours, makes me suicidal. I have a high pain tolerance but after dealing with something painful for more than twenty-four hours it wears you out like the flu. I am on a ton of pain medication from anti-convulsants to gels to narcotics to deal with the pain. This combination seems to be working.
The New England weather also plays its part in driving pain levels through the roof. If the temperature drops or has a high between 20-30 degrees my spine will ache something awful. Yesterday was 50 degrees and today it is supposed to drop to 10 so I know I am going to be feeling it. Right now it’s 30 degrees out but feels like 13. That’s my hometown for you.

I hope this month doesn’t bring the flashbacks of 2001 with it. I really don’t want to go through that again. It was tough the first time around. But you never know with PTSD (post traumatic stress disorder) how you are going to react. You might be fine or you might be a basket case. Your nerves might be on edge all day. Luckily I don’t work where this all happened so it might be easier this year. But you would think that after ten years it wouldn’t affect you but it does. Just like in March I always remember the night I fell apart. Sometimes you are just stuck with the images in your head that you just can’t get out. You get sucked back into the past. And it’s an anxiety provoking experience. But I have learned a thing or two about grounding and staying in the present.

I have a week to try and not think about it. A week of not remember what it was like waiting in the ER, talking with the neurosurgeon resident, neurology resident, and neurology fellow about the seriousness of my condition and need for surgery all on being awake for 36 hours of being in pain and agony and no sleep. But when things were at the worst and it was 4 in the morning, I had enough of being nice guy and wanted to speak to my psychiatrist about being “competent” to sign a consent form for surgery. She explained the story that I had CES and needed surgery and not the three idiots that were standing in front of me. I quickly asked if the surgeon was board certified and found out he/she wasn’t so I said find me someone who is or I am not having the surgery. That’s when they called in a pituitary specialist to do my operation. Luckily I was ok but I developed a staph infection two weeks later and needed another surgery to clean it out. Which meant another week in the hospital. I’m getting anxious writing this so I am going to stop here for now. You have the CES story if you want more on what happened after this.

issues

by Midnight Demon, posted in depression, mood disorders, physical pain, psychache, suicide, suicide attempt, transgender, writing

The new year started and I think I can finally come out of the closet as being a “girl” and tell my family I’m a guy. Then my menses started and I was really on edge. I told one of my sisters the week after new years and had a meltdown the whole weekend. It was crying from relief, frustration, anger, etc you name it. She was concerned about telling my mother and my other sister so I have decided to put that off for now.

Unfortunately this year has not started right. Week before, the dreaded menses started and have not stopped for the past 6 fucking weeks. I missed a pill because I was sick and that is how this whole thing started. I am so mad at myself because that is the one pill I take above all the others. I have had a mixture of break through bleeding and I just want it to stop so I can go back to being a man and wear my boxers again. I have to wear female underwear and I don’t like it at all. It is messing with my head. Here I was ready to come out as a guy and I am bleeding like a girl. Talk about head spinner. I feel humiliated beyond belief and I want to cut so bad. I’m fantasizing about how it will make me feel but I know that if I start I won’t be able to stop. It’s like a drug. The release is intense. Right now I’m feeling so numb that it might just help me feel something.

I hate not being able to control my menstrual cycle. I have to go back to the reproductive endocrine doc and I know she most likely will want to do the female exam I have been dreading. I feel so demoralized by this, so humiliated because I was a true man, this wouldn’t be happening. I’m so tired of not being a guy on the outside. I’m just about ready to end it all. I have time to write letters, to say I am sorry that I tried but my damn cycle fucked everything up for me. And I have to end it. I tried telling my psychiatrist this but I don’t think I got through.
My therapist has my suicide notes I wrote back in 2009. I just gave them to her to hold for me. They were written right before I was involuntarily hospitalized.

I figure if I cut it might let go some of the suicidal thoughts. I know that sounds stupid but I really think it might help. I can’t stand the pain of living this, this two lives bullshit anymore. I feel I have taken two steps back in this arena when I wanted to move forward. I hear the constant voice that says I will always be a little girl no matter what and I want it to shut up once and for all. I won’t be graphic about what I will do but I just think a little cut is all I need to get the stuff out of my head. Maybe then the pain will stop and I can feel normal again.